29 Sep 4 weeks
Today marked four weeks of Keegan being inpatient in Boston. What a roller coaster these four weeks have been! I can’t believe that after years of looking for something, anything, to tie all of the pieces of Keegan’s picture together, we are finally on the right road. We still aren’t sure exactly whether to call this MAS or HLH, but that will work itself out in time. Management of this condition will be life-long and a entail lot of ups and downs. But at least we have a better idea of what it is we’re fighting, and sometimes that is more than enough.
It’s been a very busy last few days, and it is only going to get busier. Because Keegan might be discharged from the hospital by the beginning of next week! We will be staying in Boston for a little while after that, but we would at least not have to be in the hospital. I will certainly share more information as I have it, but we are very excited that this could bring us one step closer to home.
A few notes about how Keegan has been doing this week:
- His inflammation markers have stabilized, but they are still slightly elevated.
- His liver numbers and coagulation factors are taking longer to normalize, but there has been drastic improvement.
- Neurologically, we think Keegan is almost back to his old self. We are going to hold off on a repeat brain MRI until we got home. The immediate threat is gone. We still will likely need imaging to determine what long-term damage was done, but again, that can wait.
- From a GI standpoint, we are learning as we go along. At the risk of sharing too much information, Keegan has actually had some better “quality” to his stools, as it were, the last two days. That’s encouraging and could give credit to the theory that his underlying MAS/HLH was causing additional GI problems. We will continue to watch him the rest of the week closely, and we may have to proceed with the motility study anyway. We have rarely seen him this distended, and he is complaining of his stomach hurting for the first time in his life.
- His walking is getting better. Keegan still doesn’t have much energy…hardly any at all, really. But each day is a bit better. Over the weekend and through yesterday, he was using a little kid-size walker to get around, but today we took slow laps around the floor three times successfully.
- I’m sure there’s more, but I’m having trouble remembering everything right now. I really need to attempt day-time blog updates!
